Making sense of acute leukaemia:: an interpretative phenomenological analysis of the experiences of patients and family caregivers
Background and objectives: Living with acute leukaemia can challenge patients’ physical, emotional and psychological well-being and functioning, but can be a greatly challenging experience for their families, too. Such a life-changing experience can potentially initiate or accelerate a meaning-making process that may be prolonged and demanding. Yet, there is a dearth of empirical evidence with regard to how adult patients with acute leukaemia or their family carers make sense of their illness-related experiences, and, as a consequence, clinicians still lack the knowledge necessary to tailor support to this specific population. Therefore, this qualitative study aimed to explore the processes, through which patients and family caregivers construct their meanings of acute leukaemia. Design and methods: An exploratory design was employed using serial, in-depth interviews, guided by Smith’s Interpretative Phenomenological Analysis approach. Ten adult (>18 years of age) patients with acute leukaemia and eight patient-nominated family caregivers were recruited during a 14-month period from two clinical NHS sites in Scotland. Two serial interviews were conducted with each participant, two to four weeks apart, within the first year of diagnosis or post-relapse. In total, thirty-six interviews were analysed. Results: Findings deriving from patient interviews indicated that acute leukaemia creates a state of imbalance to the person, which may initiate a search for a new equilibrium. Patients’ journeys towards making sense of their illness may involve three inter-changeable processes: decay, transformation and growth. As patients learned of their diagnosis and their treatment commenced, a sense of decay dominated their lives. ‘Feeling like being a prisoner’ and ‘living with an impaired self’ were two common emergent themes. Running in parallel, signs of transformation started to become more evident as time elapsed. Within the third making-sense process, that is to say growth, themes such as strengthened family bonds, and reprioritising values were among the most prominent. Carers’ accounts of their indirect cancer experience revealed that family members made sense of their acute leukaemia-related situation as a state of limbo that was conceptualised as a maze. After being thrust into limbo, the invisible nature of acute leukaemia created difficulties for carers to conceptualise it; however, they experienced its impact on their lives quite hastily. In order to navigate limbo, carers had to learn to steer through their social world and the unfamiliar hospital environment and eventually manage to transcend limbo by employing various coping strategies, by facilitating the cancer journey of their loved ones, and finally, by reconciling with the patient’s illness. Conclusions and future implications: Findings of this contextually and methodologically novel study highlight the complex nature of sense-making for both patients and family caregivers experiencing acute leukaemia. Additional research is warranted to further uncover the various ways in which meaning is initially constructed, negotiated, re-visited and reformed as patients and/or family carers go through the different phases of living with the illness. In any case, clinicians can rely on the findings of the present study in order to provide on-going support and guidance so that patients and carers visualise the ‘invisible’ acute leukaemia and make sense of their illness-related situation in ways that favour their short- and long-term psychosocial adjustment.
Leukaemia, Qualitative methods, Phenomenology
Networked Digital Library of Theses and Dissertations